Non length dependent small fiber neuropathy
 

Hi all,

I'm here because i'm really desperate, i have non length dependent small fiber neuropathy causing stinging over a patchy area over the body. It seems to be idiopathic and i have a lot off stuff ruled out already so i might be hitting a dead end.

The story begin with itch that waked me up one night, nothing out of the ordianary has happend before that. After that really strange feelings in my legs had been going on for 2 weeks. Like a constant buzzing white noise feeling. It resolved and now it has progressed to painfull stinging sensations all over the body. Skin biopsy had proven SFN.

I have tried one treatment of high dose methylprednisone 1g per day for 3 days on IV. First couple of days after seemded to lessen the pain but it have gone back to increasing after 2 weeks after. Does this say my SFN is certainly not autoimmume? My doc wants to test with IVIg next but is there any hope this might work?

Some time before i got diagnosed with sfn i had a depression that was quite major and a lot of tiredness and stress. Really lots and lots of stress.

Vit D was low as only finding of all tests that i had done. Supplementing this now. Any advice on what i should do and what still can be tested besides (fabry, ion gate channel, lyme, diabetes, pre-diabetes, ANA, ANCA, renal disseases) all where negative besides i have some blood in my urine.

Hopefully you guys have some answers im only 25...

Hi Findmynerves

Welcome to NeuroTalk :).

The PN forum is very active so I am sure that you will get lots of support and good ideas from other members.

Best wishes.

If you're neuropathy is definitely not length dependent--
 

--it might more accurately be called a neuronopathy, involving the cell bodies as well as the axons, and that opens up a different set of investigations as to cause, which include a number of autoimmune and other conditions:

Sensory Neuronopathies

Neuropathy versus neuronopathy?
 

I was just diagnosed with NLD-SFN. I thought that it is distinct from SN /G. One is responsive to IVIG, the latter has been deemed refractory.

Could you clarify? neuropathy and neuronopathy are similar sounding but different in my understanding. Having been diagnosed with the former, I am eager to have a clear understanding.

Thanks.

Generally--
 

--what is referred to as neuronopathy involves the primary compromise of the cell bodies of neurons, whereas neuropathy involves the primary compromise of the axonal endings, or the myelin sheathing that covers "large fiber" nerve cells.

Of course, if the cell bodies are compromised, the axonal fibers won't fare well, either. But that is a different process from the usual description of neuropathy as "die back"--this process is more like a "die forward".